Brain Power

Health Takes A Month

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I’m being a dutiful and safe adult and getting my shots. I’ve had my pneumonia one, Prevnar 13, and the two Shingrix ones, for shingles. Next up is my tetanus booster, and I’m seriously wondering: do I hafta‽ I will get it, but I need a few weeks of my health back first.

Brain injury and drugs don’t mix well. Medications don’t work like they’re supposed to when the neurons are damaged. Makes sense, actually. How can broken neurons respond normally to medication changing brain chemistry? Well, the same seems to hold true for vaccines in my single-subject study of one — me.

I’d anticipated I’d be tired and would take a month to get back my energy. And I am getting better more and more each day after the Shingrix booster (which was in the last week of March). But I didn’t anticipate all the effing side effects. Thinking back on it, those, too, make sense because we know brain injury causes an inflammatory immune response, which I touched on in my book Concussion Is Brain Injury: Treating the Neurons and Me. The Shingrix vaccine is very effective because it causes a strong immune response. As a result, I suffered a regression in my strength, my emotional regulation, my stamina, my thermoregulation, my cognitive functioning (reading, memory, problem solving all went downhill and are returning now), and my writing disappeared for a month. Made it kind of hard to blog or even get on Twitter when the latter made me so dizzy, I wanted to barf.

I very much needed homecare, just like I did after eye surgery. But physicians remain so uninformed about brain injury that they assume that something that doesn’t necessitate homecare in the usual patient shouldn’t in one with brain injury. Not true.

I’m coming out the other side. And this awful month has made me fear getting another vaccine. But the threat of shingles in the eyes is worse. Tetanus with what it does to you is more terrifying. And I’ve had pneumonia enough times to choose month-long Prevnar 13 effects of fatigue and emotional dysregulation over pneumonia’s life-threatening gift of days and days of it being hard to breathe to point of scary and then a month to recover and function again.

Health

Cold Feet, Ice Creeping Upwards

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As regular readers may know, like too many people with brain injury, I have thermoregulation issues. That means I’ve run too hot for over a decade. (I write about possible reasons why in my book Concussion Is Brain Injury.) But I haven’t talked about my cold feet and the strange phenomenon of being far too hot in my torso and head and far too cold in my feet and legs. My acupuncturist used to rebalance the heat so I was properly warm head to toe. The treatment never lasted too long, and back I’d go to being hot and cold in the same body.

I didn’t do much for my cold feet because it was the heat that posed the danger to me and sent me to the ER back in 2007. But the heat has cooled down year after year to closer to normal levels with the neuroplastic treatments I’ve been receiving. So I’ve been noticing more the cold in my feet and legs. For the last little while, the cold has worsened in my feet; nightly it begins to creep up my calves to my knees. I feel like I’m slowly turning into ice from the bottom up. It’s always way worse at night (at the opposite end of the night as the heat was).

The laser therapy clinic I go to has recently retained a new doctor, and he decided we should rule out blocked or spastic arteries being the cause. I heard nothing then suddenly I was given 24-hours notice to go to the vascular lab at the hospital I have traumatic memories of. Unbelievably, the lab was on the same floor as the behavioural cardiologist I went to for a few visits in one of those utterly futile attempts to do something about my heart (hence, one source of grief). I also didn’t know how I was going to navigate this hospital, which is normally a zoo, with my new vision. My brain still demands help remapping all first-time-since-the-surgery venues. Sigh. And indoor spaces with people moving in all different directions and sound bouncing loudly off surfaces makes it harder than outdoor spaces.

But no matter, I asked for help at the info desk. Getting a brain injury means you’d better get used to asking for help over and over and expecting you’ll have to negotiate for it, too, almost every time and forging into protracted negotiation that’ll come with a price when people say no. But I digress.

I received help and even better, the place was like a morgue. I have no idea how I lucked out! It made navigating the space infinitely easier. The weird thing is that the place seemed a lot smaller than before my eye surgery. It’s like having true binocular vision has shrunk spaces and even devices like my iPhone in my perception.

The vascular lab takes your blood pressure super quick in your arms, legs, ankles. An ultrasound wand is faster than regular blood pressure equipment! Then the technician begins to sound your arteries with ultrasound to produce colour pictures of your blood flow with the grey landscape of your arteries and surrounding tissues. Blue for 24 cm/s; red for -24 cm/s. Every artery she found, she’d listen to the blood flow. Hearing the strong beating whoosh whoosh of my blood pumping through my abdominal aorta, arteries extending into my thighs, arteries behind my knees, was pretty sweet. The strength lessened on my ankles and the arteries in my feet were very difficult to find. Ultrasound needs fat to bounce off to create a picture of the arteries, and feet don’t have fat up top (or at least mine don’t). No beat. Ten percent of the population apparently has no discernible pulse in their feet. Welcome to the ten, Shireen! Even the beat from a couple of points on my ankles sounded like it came from far off and was high pitched unlike the arteries at the other end of my legs. Their beat was deep, like a bass or baritone.

What did this all mean? I have “absolutely gorgeous arteries.” My arteries aren’t the reason for the cold in my feet and creeping up my legs.

Since the low-intensity light therapy (laser therapy) over the bottom part of the spine warms up my feet and keeps the ice from creeping up at night, the nerves coming out of the spine there were probably affected. The lap belt would’ve cinched after the first impact in the car crash. It would’ve stayed cinched during the next two impacts, pressing into my body. Peachy. Cranial nerves stretched, reducing my saliva, increasing risk of cavities sans me knowing because no one thought to look nor monitor. And looks like same with spinal nerves where the lap belt was and no one thought to look nor go over the possible sequelae and what I should do about them, like wear socks to bed. I’d never had to before so didn’t think about it until I heard of someone doing that a couple years ago.

And now today, I have a light therapy home unit I can use to keep my feet warmer and a clinic to go to where they can help me deal with these perplexing issues. Brain injury doesn’t arrive alone. It comes with friends who need treatment, too.

Health

Nineteenth Brain Injury Anniversary

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The brain project, flamingo painted on a brain to represent mental vacation

It’s been a year of painted brains, painted masks showing the experience of injured brains, and no change. Awareness gets you nowhere, it seems. It’s been a year of screaming for help, giving up, and only then getting effective reading comprehension restoration and grief therapy. The irritating reality-denying be-positive messaging finally stopped, and the healing effects of getting the crucial help I’ve been seeking for my reading for almost two decades began.

I wish though I hadn’t had to yell and beg for the help I needed over and over and over and over. I wish people had had the courage and stamina to support me from the start in my recovery. I wish health care professionals had the excitement in their hearts to ditch the neglectful standard medical care of brain injury and innovate so as to give innocent people their lives back.

I hate brain injury. I hate that I had to pay the price of being traumatized to get the effective treatments and support I needed. Why are people so loathe to help the injured?

Brain Health

Eighteen Years, Eleven Months, Three Weeks

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flic.kr/p/2bcpboE

When I first met a person who’d lived with brain injury for twenty years, it seemed so far into the future for me. I could barely comprehend living with brain injury that long. I expected to be fully recovered by that point, myself. Roll eyes here. I was working hard on improving my health, pursuing treatments I could afford, and with the help of a therapist from Community Care Access Centre (CCAC), increasing my functionality more and more.

Eighteen years, eleven months, and three weeks after my injury, I’ve lost the CCAC help due to government cutting back on health care for brain injury to pay for administrators. I’ve suddenly regained reading comprehension and am practicing most days to keep progressing back to my old reading ability (one of my health care providers doesn’t think that’s possible). I’ve lost all the gains I made in my functionality — I’m still hanging on by sheer willpower to writing a novel every November. And I’m trying hard to keep up Psychology Today blogging even while I can’t remain consistent in writing here or on my political blog. I’m facing the horribly unbelievable fact that I won’t have fully recovered by twenty years. The grief is real.

Brain Power

Reading Re-Evaluation Results After 81 Hours Visualizing and Verbalizing Instruction with Lindamood-Bell

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Today was re-evaluation results day! It seems like another lifetime ago yet only yesterday that I received my initial reading assessment results from the Minnesota Lindamood-Bell centre. I’ve completed eighty-one hours of visualizing and verbalizing instruction with Lindamood-Bell’s Double Bay, Australia centre (which because of the time zone difference allowed me to do it two hours per night, five nights per week). I had my re-evaluation this past Sunday, Monday, and Tuesday nights. The time was broken up because of my fatigue — I don’t have a lot of stamina — and because they wanted to use new-to-me stories in addition to the same ones I had been tested on the first time around for the reading comprehension section.

Like before, all the results were normed to my age and gender. And those tests that haven’t been normed in awhile, were used for diagnostic purposes.

Re-Evaluation Results

What I wrote about my June results is in italics; my re-evaluation results underneath each point:

  1. My reading rate is too slow. I’m in the 16th percentile. That means 84 percent of women my age read faster than me.
    1. My reading rate has not increased. I remain in the 16th percentile.
  2. My foundations are solid. These are the ability to hear phonemes, the sound parts that make up words. The ability to recognize and pronounce high-frequency words. The ability to figure out an unknown word within the context of known words.
    1. My foundations remain solid. I can still sound out multi-syllabic words, as they’ve heard and seen during my sessions while reading complex material like philosophy of mind.
    2. Although a couple of my scores dropped in this category, they remained in the above grade 12 level. The word attack — decoding nonsense words, which is about sounding words out — also has only 26 possible points. So going from 26 out of 26 last time to missing 2 of the 26 this time equals a big drop in percentile; if there had been more points, the drop would not have been as large. The symbol to sound one (things like sound out “ou” or “oa”), I like to think dropped because Canadian accent versus Australian accent. Heh. But to be honest, I didn’t put a lot of effort into that one test because in the real world, I can pronounce words okay. It’s my reading comprehension, reading rate, and amount of text I can read that are the issue.
  3. I rely on my vast knowledge bank and familiarity with language to prop up my comprehension. When I cannot see a word but only hear it and I have to pick out an illustration that best represents the word, I cannot rely on my ability to decode a word from its roots to figure out what it means. And so I don’t do so well. Based on results from standard vocabulary tests, I drop about ten percentile points, maybe a bit more, when given the same vocabulary test when heard, not seen, and using pictures instead of words to “define” the word spoken to me.
    1. Well! I’m so chuffed. My Peabody Picture Vocabulary Test result shot up.
    2. There was actually a greater than 10-point discrepancy between a regular vocabulary test and my initial Picture Vocabulary test result.
    3. I went from 82nd percentile to 95th! That’s more like it!
    4. This test measures receptive vocabulary, that is, vocabulary that’s spoken to me. The improvement reflected my improved ability to image words.
  4. My accuracy in reading words is very high.
    1. This remained the same.
  5. Fluency is rate plus accuracy. So my fluency is not at the level that my reading foundations indicate it should be. (Slow reader.)
    1. This has not changed.
    2. My reading rate remains in the 16th percentile.
    3. My accuracy remains very high in the 95th percentile.
    4. Fluency remains in the 63rd percentile. The only way for me to increase it is to read faster.
  6. When I can rely on my knowledge bank and ability to decode words, my comprehension is good. When I read new or lengthy material even text at grade six level, where I can’t rely on my knowledge of content and language, my comprehension drops a lot.
  7. Concept imagery is the ability to conceive a word, sentence, or idea as a whole in a kind of picture. I don’t have it. It’s sort of, uh, depressing . . . more than that . . . grievous and devastating to see one rated as having a mental age of 14.5 or 13.5 years in these tests after eighteen years of rehab, active treatments, and passive home treatments. On the other hand, they confirm I’m not imagining my reading problems. I have real difficulty despite the fact that I’m “articulate” and can read words no problem.

In relation to points 6 and 7: big change! Happy Snoopy dance!!

Concept Imagery

Lindamood-Bell’s visualizing and verbalizing instruction is aimed at improving one’s ability to conceive a word, sentence, or idea as a whole in image form. Being able to conceive a word or sentence or paragraph or idea as an image both improves comprehension and recall. My re-evaluation objectively measured whether I’d learnt how to do this and improved in these two areas. In the words of the Double Bay Associate Director, I “knocked it out of the park.”

Sketch of visualizing and verbalizing instructionAs I’ve detailed in previous posts, Lindamood-Bell Australia began teaching me how to visualize with a single word. We moved on pretty quickly to a single sentence. Once I learnt what is meant by picturing a word then picturing a sentence, I had to learn how to verbalize it. I didn’t really understand “visualizing and verbalizing” until about August even though I was doing it.

It isn’t enough to create a mental image in your mind, that is visualize an entire sentence then a whole paragraph then an entire page; you need to be able to describe that image and also summarize the sentence or paragraph or page in words  clearly — that is, verbalize it to your clinician.

I didn’t get to the chapters/articles level as shown in this diagram by the Minnesota Director. But I did reach the Page level and soon after during the Application stage, the Page by Page level.

So what did that mean?

The Big Result: Reading Comprehension and Recall

In the Gray Oral Reading Test, Form A, which is one of the tests used for diagnostic purposes, I improved hugely. This test measures straight recall. You read a paragraph. They take the text away, and you have to answer four open-ended questions posed to you by the assessor. I had inconsistent and kind of depressing results the first time. This time — 100% all around, well, except for one pesky grade level. But I improved there too! At the grade 6 level, I improved from 75% to 100. Eighth grade I remained at 100%. Tenth grade, I improved from 88% to 100%. Grade 12 I went from 50% to 88%. College level, I went from 75% to 100%. And adult level I remained at 100%.

Gray Oral Reading Test, Form A Pre and Re-evaluation results

I’d noticed my recall had shot up. I was able to not only remember but have confidence in what I was remembering because it felt solid in my memory banks. I remembered what I read — whether pages from the novel The Lions of Al-Rassan or sections in Philosophy of Mind text — because I could see the images in my head. For the first time since my brain injury, I was also able to build up the big picture of what I was reading — this requires recall. If you can’t recall what you read previously, you can’t build up the big picture. But you also need comprehension.

The Gray Oral Reading Tests 4, Forms A/B comprise stories you read out loud then they take the story away and put in front of you five multiple-choice questions. You read along with them as they read out loud the first question and its four possible answers. After you choose A, B, C, or D, they read the next question, and so on. This time I recognized within those questions, concepts such as main idea, higher-order thinking questions, questions about feeling and expression, things I still struggle with but are way, way, WAY, better than back in June. They saw I was stressing over reading stories I recognized from my original assessment, wanting to do better, still not happy at how back in June I’d struggled over answering some of the multiple-choice questions. I was definitely not struggling as much. But was that a practice effect or comprehension? It felt like comprehension to me. They decided to test me again using new-to-me stories without telling me why they were giving me additional stories to read; they scored me on those stories. I was less stressed as I read the new stories, the questions, the multiple choices, and answered the questions. I actually scored better on the new ones than on the ones I knew from the June assessment! That’s what stress does to you!!

As I mentioned earlier, my reading Rate results from this test remained abysmally slow: 16th percentile. Accuracy remained at 95th percentile. Fluency remained at 63rd percentile. But — drum roll –my Comprehension score went from 63rd percentile to 84th! This is actually the top percentile for adults. The best part: I scored 70 out of 70. *Pumping fists*

Gray Oral Reading Tests 4, Forms A/B

They don’t test for volume of language, that is, how much text I can read in a sitting. But we know experientially that I’ve been increasing week after week the volume I’m reading. We began with a sentence. I’m now up to four pages, reading them Page by Page. My next goal is a chapter. I don’t know how I’ll get there, though. I’ll be working on goals next week.

Main Idea

Reading rate is the same. Volume and Comprehension are up. My reading rate hasn’t changed, but I’m understanding much better what I read and I’m reading much more text with comprehension and good recall.

It is possible to restore reading comprehension after brain injury! No strategies needed anymore!! (Well, except for covering off the text . . . for now.)

I haven’t tested my long-term recall in the real world. But every time I summarize what I’ve read so far in the novel, starting from the Prologue, I remember it. The Philosophy of Mind is not as solid with just me reading it, probably because it takes more mental energy and effort. I fatigue quicker with it; fatigue plus huge effort equals not being as disciplined in creating images. I also am not good at creating higher-order thinking questions (HOTs). I’m going to go back to my course modules and use those questions as my HOTs. But I think this day calls for cake!!

Brain Health

Visualizing and Verbalizing Four Paragraphs with Lindamood-Bell

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Yesterday, at the start of week . . . uh, what week are we on . . . oh right, five, I read a four-paragraph story during my reading comprehension retraining with Lindamood-Bell Australia, but we didn’t finish the full Visualizing and Verbalizing process. Today we did.

After the clinician read a grade level seven Whole Paragraph, I began reading a four-paragraph story in hour one. I got to the end of the third paragraph when it was break time. I inhaled some sugary treat, and the clinician decided we would finish the four-paragraph story. Fine with me!

The sugar moved my by-then sluggish neurons to read the fourth paragraph then finish the whole process of first visualizing the story in blocks and then verbalizing the entirety of it, including giving the main idea and answering questions about the story.

All told, the four-paragraph story took me about one and one-quarter hours to get through.

Since we still had time left in hour two after completing the four-paragraph story, the clinician read a Whole Paragraph story, and I have a word summary of it. Then time was up, and I was outta there . . . well, logging out as quickly as I could move and click my mouse.

We began the first hour with me having to recall the four-paragraph story we read yesterday. I did okay, if you count remembering from the middle on then remembering bits and pieces of the first two paragraphs and recalling them out loud out of sequence, okay. I got the details right because I could see the pictures in my head. Visualizing really does facilitate recall! But since this is the first time my recall was out of sequence, clearly we’re starting to challenge my most injured neuronal networks and areas.

Like yesterday, I have a bit of a concentration headache, and my entire head feels wrapped in cotton wool. I’m dying for bedtime, but sleep isn’t guaranteed as sleepy and tired as I am. I have the feeling that this intensive cognitive work somehow revs up my brain so that it’s tired yet cannot sleep until enough time has passed for the neurons to return to their usual working level.

Brain Power

Paragraphs in Lockstep, Restoring Reading Comprehension After Brain Injury with Lindamood-Bell

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Working the neurons, changing pathways in the brain, fills every cell in my body with white noise. Fatigue while learning how to comprehend written text is spreading into the rest of my life.

“Where do you want to meet next time?”

“Uh . . .”

“What part of the city do you want to do next?”

“Uhhhh . . .”

“Why don’t we touch base closer to the time and discuss it then?”

“OK,” I agree, dying for a nap. Or coffee.

Normally, I know what streets, buildings, areas I need to do next in my work with my CNIB orientation mobility trainer. But with the Lindamood-Bell Visualizing and Verbalizing program sucking every oxygen and glucose molecule out of every brain cell, every muscle cell, I got nothing left to answer simple questions.

As always, I find it remarkable how much a sweet something — not tooth-sucking sickly sweet but flavourful with sugar — can revive me.

Why am I surprised?

The brain runs on glucose, one of the constituents of sugar. Glucose refuels the brain’s energy packs.

I’m almost halfway through restoring my reading by developing my ability to create imagery while reading.

Early this week, the sound of the plane rattling in the story I was reading popped into my mental imagery. When I told the Director of the Lindamood-Bell Australia Centre, he was very excited. Very. This was a sign of automaticity, he explained. Not only did it pop into my head without any conscious thought on my part, it was also a second sense to add to the visual sense that we began with.

They’re changing up the program again. At least this time, it’s a balance of easing off with keeping the accelerator on.

Each hour begins with me straining to recall what stories I read the day before (or occasionally at the start of the second hour, the hour before) and then giving a word summary based on my recalled pictures of that story. I can usually recall one story, but a second story for the second hour takes effort. Yesterday, total blank. But once my clinician prompted me with the words “alligator turtle,” the pictures of that story began to flow back into my consciousness and I was able to recall most of the details. Sweet!

After that, either I or they read a Whole Paragraph followed by one or two Paragraph by Paragraph, either two or three paragraphs long.

The change up is that the grade level of Whole Paragraph has been dropped back down from grade level 9/10 to level 5 to be on par or one level above Paragraph by Paragraph.

The idea is that through Whole Paragraph, I will learn how to create concept imagery of more and more complex, dense, and abstract language. And through Paragraph by Paragraph, I will learn how to create concept imagery for longer and longer passages of text and develop greater stamina during reading. They want to keep the former at a level or two higher than the latter. And they want to increase the levels of both in lockstep with each other. I guess they wanted to give me a bit of a break by starting a new book of stories using this approach at level 5.

Brain Health

Reading after Brain Injury: Making the Decision to Try Restoring It Again

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Why creep when feel impulse to soarSo after stressing and dithering and talking and talking with my health care team, I’ve taken the plunge and will soon restart my efforts to take back my reading from my brain injury.I wrote previously about a recent comprehensive reading assessment with Lindamood-Bell, a US company devoted to training/restoring reading and math to students and adults, and I also wrote about my results. They confirmed my experience with trying to read long-form materials or even material as short as tweets when I’m tired. I was introduced to the concepts of dual coding theory and reading comprehension through concept imagery. And I learnt more and more about how they would restore my reading comprehension using their Visualizing and Verbalizing Program that they recommended. To be honest, I’m still absorbing it all. But I cannot wait to start. I need my reading back in time for NaNoWriMo; so in my usual brain-injured way, I’ll just roll with it while my brain learns, forgets, remembers some bits, processes, absorbs more info, struggles to integrate, comprehends a bit more, and finally catches up with my actions.After discussing it with my neurodoc*, I’ve decided to contract for 80 hours. It’s the minimum required. Even though 120 hours was Lindamood-Bell’s recommendation to regain my ability to read philosophy textbooks and comes with a 5% discount, I can’t afford it. Or rather the financial pressure of having a large upfront cost would stress out my brain so much, it would probably fight against the instruction. I can always extend it if I need more than 80 hours, but I’m hoping I won’t have to. (Heck, I can’t even afford 80 hours, don’t know where else I can get the money from once the line of credit runs out, tell myself that’s what credit cards are for, and my teeth grit at the thought of carrying a balance on them. But the soul cost of not pursuing this opportunity to get back a core part of who I am is worse than the financial cost, even though organizing it and managing preparation for starting Visualizing and Verbalizing has shot up my busy brain — ruminations that come with brain injury like a hamster shot full of steroids racing on his wheel.)I’m not going to rely just on hope though to make those 80 hours behave like 120. I’m going to use my audiovisual entrainment device to perk up my brain and enhance relaxed, focused attention so that I can respond as optimally as I can to the instruction. I’m also working with the ADD Centre to see if my brain biofeedback protocols can be tweaked to facilitate the neuronal regrowth we want. We’ll be keeping the gamma brainwave biofeedback for sure since it supports my whole brain and “grounds me.”My neurodoc and I had a brief, candid discussion about my coffee purchases. If I cut down on the treats, I can afford the increased cost of upgrading to faster broadband. My current basic broadband is too slow for online instruction with Lindamood-Bell, especially as I’ll be working with their Australia centre. Wow, geographic distance does make a diff. What was OK during assessment with their Minnesota centre was not so hot with the Australia centre with its many moments of video stuttering and audio distortions. But it did the job of discussing my options and getting all my questions answered at once instead of the painfully frustrating slowness via email, with the 14-hour time zone difference slowing it even further.With faster broadband comes another cost: a VDSL modem. Really, you think all you have to take into account is the hourly instruction rate; the next thing you know, all sorts of costs are raising their hands, going count me in, too! Maybe somehow I’ll pay it all off in a couple or four years. I’ve been down this road before. For the last couple of years, it’s been nice not carrying debt in order to pay for my medical expenses in universal-health-care Canada. But I guess that vacation is over. Sigh. By the way, others with brain injury who require medical care not covered by their provincial health care pay for it by credit card. Imagine being on ODSP, living in social housing, and having to pay hundreds of dollars or over a thousand per month for medical expenses‽ Naturally, credit cards get maxed out. Canada’s universal health care is pathetic and impoverishes desperate people even more than being unable to work does. But I digress. If all goes well, I’ll be starting July 8th. Yes, a Sunday. The only time I’m reliably available five days in a row for two hours per day is at night. Lindamood-Bell centres close at 5:00pm in the summer (North America), so that’s why I’m doing it with Australia (winter hours). Their office hours coincide with my night hours. Try to wrap your head around not only a different time but a different date! The contract shows me starting July 9th, their Monday, while for me it’s July 8th! Needless to say, our emails have been full of “your time” and “my time”s!Now that everything is almost in place to start — fingers crossed no more hiccups — I’m counting down the days. But I should probably rest — and rest some more while I can.


*My neurodoc and I have been working things out for about a month now since I fired him and then discovered my brain injury grief, including for losing my reading and the long soul-destroying struggle to get it back, was more than I could handle on my own. However, I wasn’t about to continue the way we had been with him pushing his wrong goals on to me. I figured out a paradigm shift to force him to pursue my goals and only my goals. Sometimes doctors don’t know best. Since he got the message, things have been slowly improving. It helps that we’re learning that he has to explain things better not just assume I’m following his miles-a-minute thinking. He’s also realizing that given my severe abandonment issues, he needs to be more obviously supportive. I’m crossing my fingers, but I think I can say we’ve turned the corner. Trying to find good, appropriate psychiatric or psychological care for managing brain injury life is not easy. Ontario doesn’t cover psychologists for people with brain injury. And too many psychiatrists, who are covered since they’re physicians, treat it with a medication-only approach. Wholly inappropriate and, I might say, injurious. So I appreciate mine learning to do better.

Health

Weighted Blanket: Using It with Brain Injury, PTSD, Fibromyalgia

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Several months ago, one of my brain injury tweeps told some of us how she’d gotten a weighted blanket for Christmas and was sleeping snug as a bug — at last. I hadn’t heard of a weighted blanket before. She explained how she’d heard of them through her work with children with autism, and I looked more into it. As I did, Ballast Blankets out of Alberta reached out to me on Twitter, I checked them out and liked their business culture, and I bought their teen size with the assurance of a 30-day money back guarantee.

My biggest concern was my thermoregulation issue: was I better enough to tolerate the heat from sleeping under a 7 kg blanket? Could I lift the weight regularly to wash and make the bed? I decided no and went with a lighter one.

https://twitter.com/shireenj/status/952176654310309888?s=21

Apparently, weighted blankets work similar to deep pressure touch and so create a sense of calm.

“While research on weighted blankets is sparse, deep pressure stimulation has been found to calm adults and children with anxiety, autism, and attention difficulties, researchers say.” WebMD, Seeking Better Sleep Under a Weighted Blanket

To do that, they must be 10 to 12 percent of your weight. Because of my shoulder and neck injuries from the car crashes years ago, I couldn’t imagine having to lift, adjust, sleep under a blanket weighing ten percent of my weight. The teen size is about 8 percent.

I received it as the Olympics were beginning. Uh, bad timing, Shireen.

It’s very difficult to gauge the effectiveness of a new measure to improve sleep when you’re staying up until all hours and/or waking up super early to watch athletes compete on the other side of the planet!

https://twitter.com/shireenj/status/964889294090403841?s=21

The friendship with my new blanket was a bit fraught because of the Olympics and then the Paralympics and, as well, the usual adjustment period that Ballast Blankets referred to.

I had the blanket lengthwise at first and under my coverlet. But that was too heavy, and I snored! I don’t snore. Not good. I folded down the coverlet so it didn’t add to the blanket’s weight. The second problem was my feet hurt from feeling weighed down. Also, although they’re usually cold, they heat up during the night, and under a weighted blanket, they became red coals. I find it’s better to wear socks and have my feet only lightly covered, weighted blanket or no weighted blanket.

I turned back to the internet and read again others’ experiences. One person used the blanket horizontally to cover both herself and her husband. I decided to try that and stretched the weighted blanket horizontally across my bed, covering me from just under my neck to below my knees. I used my coverlet to cover my feet and just lap over the weighted blanket.

Much better.

Once I recovered from the Olympics and Paralympics, the effect of the weighted blanket began to take hold. Some nights I got restless; trying to turn under the weight hurt too much. But over time, I got used to how to lift the weight and adjust my position. Restless nights have lessened overall though. I also am using my audiovisual entrainment SMR For Sleep session much much less as I’m not usually still awake at 1:00am . . . 2:00am . . . 3:00am. It’s true, my sleep had been improving. But it began to feel more solid, more like I was falling asleep quicker after my hypothalamus fix night session, and even getting sleepy before 11:00pm or midnight. These amazing changes that I’m still adjusting to could be because of the blanket and/or my PZ brain biofeedback protocol that I’ve talked about before.

It wasn’t just my subjective feeling that showed improved sleep, but also the sleep app I’ve been using for years. I don’t know how sleep apps determine “sleep quality,” but however they do it, it immediately shot up. It took awhile though for it to create a measurable improvement in my sleep. That improvement has remained consistent or risen slightly. Although, one may dispute how apps measure “sleep quality,” it is a consistent method, so I think the measure of improvement is valid.

Sleep app screenshot showing weighted blanket improved sleep by 3%

Once I got used to the weight, I was like other reviewers and actually found it comforting. As summer heat approached, I began to worry about what I’d do . . . maybe use it on the couch like some do during daytime rests or naps. Instead, when temps soared and I began to burn, my body and brain pulled the weighted blanket up to about my shoulders, letting my feet stick out under a sheet. During the night instead of shoving the thing off me to cool down, it crept up closer to my neck. It seems that I’m so used to it now and that whatever it does to help me sleep, burning and mildly sweating* doesn’t deter me from using it.

Researchers are considering looking at using weighted blankets for fibromyalgia, but so far, I couldn’t find anything on how people with pain, physical injuries, or conditions like fibromyalgia tolerate it. From my own experience, perhaps less than the standard weight percentage may be tolerable and still provide some benefits. I think if I had no pain, it would be even more effective in countering the bad sleep effects of brain injury and PTSD.

As for Ballast Blankets, I found them pleasant to deal with and would recommend them. (I received the same discount offered to all early buyers.)

*I’ve written before about my injured brain’s inability to regulate my temps and to sweat, and I wrote in Concussion Is Brain Injury the possible neurological reasons why. I am still not normal apparently: sometimes I sweat and can cool down; sometimes I just burn.